Tuesday, December 10, 2013

A Facilitated Conversation On Mental Health: A National Dialogue
By Sharon Goldberg
On July 23, 2013, Marvin Spieler and I attended a facilitated community conversation about Mental Health as part of The White House’s National Dialog on Mental Health, sponsored by MH Mediate. On January 16, 2013, President Obama began this initiative to raise awareness of mental health issues and ultimately reduce the stigma associated with mental Illness. One vital aspect of these discussions is in the creating of community solutions. People throughout the country are being encouraged to discuss mental health related issues and determine the best course of action to improve mental health services in their own communities.
We were organized into groups and seated at round tables, each person having the opportunity to discuss various aspects of mental health as it related to services. Our table had three mental health service consumers. One individual not only received mental health services, she was working on her doctorate in social work and had been providing services to mentally ill clients. Another individual was a social work student intern. Another worked with troubled children and adolescents and was primarily concerned with obtaining mental health services for them. Our two facilitators had very little knowledge about the issues facing mental health consumers and acknowledged their enhanced knowledge as a result of our candid discussion.
The three major topics discussed were: (1) how mental health stigma affects our society and what we can do about it; (2) what barriers to communication about mental illness exist and how can we overcome it; and (3) what strategies we can use to ensure full access to mental health services. All ideas from these discussions will be transmitted to The White House.
Of the many examples of stigma, barriers to communication about mental illness and solutions to these problems discussed, most noted was the criminalization of mental illness in the recent mass shootings in Connecticut, Colorado, and Virginia involving persons with some sort of mental disturbance. Another example closer to home was the mentally disturbed individual who had pushed Kendra off a subway platform, resulting in “Kendra’s Law,” or AOT. Also discussed was how providers of mental health services, often themselves, stigmatize the mentally ill in that they are often selective in whom they wish to treat. The news media was also cited as a culprit for its stigmatizing headlines in newspapers and insensitive TV and radio news reporting.
Our conclusion about communication barriers to mental illness discussed included such varied factors as fear, culture, stigma, prejudice, blame, lack of training and lack of listening. We could improve communication by bringing in family, opening up to cultural understanding, and moving away from the medical model of treatment to a more humane approach. The patient is a person first, not a disease. We should stop the media from misrepresenting the mentally ill, and we should make it easier to navigate and access services.
The question of what problems need solving when it comes to obtaining better mental health services include housing, education, employment and community supports. As Marvin Spieler stated, “A home, a job, a friend.”
Overall, it was a very positive experience. I had the chance to express my views and get positive non-judgmental feedback. I believe these discussions will lead to a better understanding of mental health issues, more humane treatments and positive outcomes for consumers of mental health services.

My Life As My Very Own “Truman Show”
By Lauren
When You Feel Like Life is Being Orchestrated Beyond Your Control
I grew up a very happy, healthy child. I had a loving family and plenty of friends. I always excelled in school and sports and was accepted into college right after high school graduation.
I was a college graduate and gainfully employed by the time I was twenty-two. I had a fantastic love life, an enormous circle of friends, and was having a blast living in the big city of Chicago.
This was my life for the first five years after college, until everything started falling apart. It began at the office.
I started suspecting that my phone calls weren’t real. I thought that hired actors were on the other line and that none of my accounts were actually real. I started spending less and less time with friends and family and more and more time alone. I also started getting what I thought were secret messages in the mail. I wasn’t able to understand what was happening, but the stress became too much and I was unable to keep my job.
I felt completely overwhelmed. I had started to consider telling someone what was happening, but by that point I was hearing voices that told me to keep quiet, and that if I told anyone what was really going on I would be killed. I was certain I had been implanted with some kind of device and was being watched on a hidden closed-circuit television. I knew if I didn’t make a drastic change, something would happen to me.
I decided to sell my belongings and move. I packed my car and got rid of anything that wouldn’t fit, or that might be bugged, and drove to Minneapolis to stay with some close friends from college. They had no idea what was going on.
Things were fine in Minneapolis for a while. I got a new job and was doing my best to save money to get my own place again. It was about six months until I started getting the text messages again. I was also getting emails I couldn’t explain, and the voices came back. By that point I was living with a roommate, I had lost my job again, and was not eating. It got to a point where I was convinced that my roommate was plotting against me, and had plans to murder me in my sleep. I would stay up all night, locked in my room writing and waiting for my roommate to come in and kill me. I would sleep a few hours during the day while she was at work, and the rest of my time was spent walking. I walked nearly twelve miles a day, still refusing to eat almost anything. That was the first time I was taken to the hospital and put in a psych ward.
This went on for another year until the messages, voices, and then visual hallucinations filled my day. I couldn’t hold down a job and sometimes even had trouble speaking. I was back home living with my mom and spending time either sitting in my room in the dark or walking the neighborhood talking to myself.
Because I couldn’t tell anyone what was going on, my trips to doctors and psych wards proved to be mainly useless. It wasn’t until I fled my mom’s house to Los Angeles in the middle of the night in her other car, that I finally got the help I needed.
My oldest and best friend lived in Los Angeles and took me in when I arrived there. She also got me to admit myself into the hospital there, where doctors and psychiatrists were finally able to give me the diagnosis of schizophrenia and give me the medication that would finally help bring me back to reality.
Things are better now. I was on disability for a couple of years, but was recently hired by a great company to do the same kind of work I did before everything started going wrong in Chicago. I also live near my mom, so she helps me when I have bad days.
Deep down, I wish all of this never happened. I don’t feel like myself. I’m much more withdrawn, overweight, and exhausted much of the time. However, I suppose this is better than the alternative. I also feel embarrassed about my diagnosis, but am working on that, too.

The Trouble With Dimps, the Vulcan, and the Hypersexuals
By Joe
One Man’s Journey With Mental Illness
In 2006, my wife accidentally found out about my 70k credit card debts. She feared she would be made homeless if I stuck around so she asked me to leave. It was October and I was on a manic high at the time. I was living in a cartoon world, disappearing for days without even mentioning where I was going. One day, I received a phone call from my psychiatrist. He was concerned about my behavior and wanted to see me. I didn’t want to see him, and said I was fine. But he insisted.
At the hospital, I was met by the senior house officer (who resembled a Star Trek Vulcan), and led me to a room. The door shut behind me with a thud. There was no handle on the inside, just another door that led to another world. She asked me some questions to evaluate me.
Did I hear voices ? “No.” When I read a book, did I think it was written just for me? “NO.” When I watch TV, were there hidden messages for me? “No.” She asked me what year it was: “2006.” The month: “October.” The day: “The 15th.”
I was doing pretty well, but then came the killer: Spell the word “WORLD” backwards. I tried “D-R-L-O-W.” WRONG ANSWER! So she decided I wasn’t fit to be at large and I could admit myself for observation as a voluntary patient, or they could get a doctor and section me. That’s a minimum six-week stay. So, I chose the voluntary option.
I was shown to my room, the windows of which did not open. There was a bed, chair and wardrobe. A member of the staff came in. John with keys around his belt (that type) said, “Come on, I’ll show you around.” There was a game room with a three-legged pool table and about six billiard balls, a kitchen, a laundry room, and a lounge where the other patients sat watching daytime TV drivel. John said, “Make yourself a drink and join the others.”
A few residents were wearing dressing gowns. One girl had bandages on her wrists. Mike was talking on a cell to a girl he was waving at through the window. She was in another ward. Upstairs he turned to me and said she wants to know your name. This was Lorraine, who I became good friends with; we even had a fling in the laundry room. All the manic patients are hypersexual.
A new patient discovers quite soon that a ward has its own rules. I was having a cigarette in the smoke room chatting to ‘Jesus of Stockport’—an Asian with long hair and a beard. Jesus tells me he has a haulage firm and can get me cheap trainers. He also tells me he is undercover, working for the NHS. His job is to assess which patients are suitable for jobs in the outside world and in his haulage firm. The strange thing is with all this money you would expect he could afford a pack of cigarettes .He watches me as I put my dimp out in the ash tray. There is still a full centimeter left on it, and in the Arden ward that’s a lot of dimp. Gerry is keeping an eye on that dimp as well. Then Tony comes in and says, “Don’t leave your dimp in the ashtray, the Paki will get it.”
Lorraine used to pretend she was my doctor during family visits. She asked Tom who was visiting me to help put up the Christmas tree even though it was only October. It was a plastic one kept in the toy cupboard. When the tree was up, all the patients in the ward applauded. This attracted the attention of the staff, who quickly removed the tree. But an idea had been planted, and it had made everyone happy. So, every night for the next two months, when the staff had been reduced, we would put that tree up and decorate it.
I was in demand for interviews with visiting doctors and students. I was a textbook bipolar guy. They could not take notes fast enough. If they needed help, I could prompt them or lead them to the next question. I could tell the truth or lie, mix it up, do anything they wanted. I remember a Chinese student practically wetting herself when I got going. She could not believe her luck. I was released just before Christmas, after the kitchen was closed down by the health and safety inspectors.
Note: Joe's story takes place in the United Kingdom.

Medication (It’s a four-letter word)
By Sarah (visit her blog at: www.doesthatmakemecrazyblog.com)
I suffer from bipolar disorder, a debilitating psychiatric illness that, for most people, requires a constant stream of medication.
Let me tell you something about medication. I need it to function. Along with psychotherapy, lifestyle and diet changes, and avoiding any number of things that might trigger an episode, I need medication to be able to achieve anything even approaching normal human functionality. I wouldn’t, and in fact, couldn’t, be without it. I want to put that out there before anything. I am thankful that I have access to medication. But getting to a place where you can be living well with mental illness is not as simple as doing all the right things and remembering to take your drugs when you’re supposed to.
Medication is a four-letter word. For all the good it can do when it’s working right, when it’s wrong, it can mess you up. Medication can make you sicker than the illness it’s intended to treat. I’ve been put on, and taken off an endless list of prescription medications. Pills of all different shapes, colours and sizes have gone into my body in the fashion of a lab test animal. The paper inside the boxes that lists side effects may as well be written just for me. There’s not one unpleasant side effect that I’ve yet managed to avoid. At some point over the last five years, I have experienced them all.
Some of them made it impossible for me to get out of bed. Some have made me repulsed by food. Others have made me insatiably hungry. Some have made me vomit unpredictably, or made me so dizzy that I couldn’t keep my eyes focussed or my feet on the ground. I’ve been so weak that I couldn’t walk. One made me shake so severely that I had to be carried to the bathroom, and couldn’t brush my own teeth without help.
I’ve regularly slept for sixteen hours a day because of medication, and been literally a zombie for the other eight hours, barely able to sit up straight, held down to my seat by the incredible burden of holding open my own eyelids, having no energy left over to do anything else.
I’ve gone through medication hell with the aspiration that I would find a combination to give me back the use of my brain, one that would make my thoughts make sense and convince the darkest version of myself that life was worth living.
This part of my journey has been horrendous. Even worse was that I developed a severe form of allergic reaction which meant that once my brain was settled, and finally deciding to cooperate, my medication then had to be abruptly stopped, making me a slave to whatever my brain wanted me to feel at a moment’s notice, most of which was unpleasant to say the least.
But this isn’t a cautionary tale against the use of prescription medication. Quite the opposite. If you’re treated for a significant period of mental illness (and chances are, at least one in four people will be), it’s more than likely that you will experience the side effects of prescription psychiatric medication. I want to emphasise the importance of pushing through it. Never take yourself off your medication without medical consultation. If, like me, you are within the tiny percentage of people unfortunate enough to experience potentially life-threatening side effects, seek medical attention immediately. Read the insert in the box so you’ll know to distinguish between benign side effects and potentially dangerous adverse reactions (which I stress, are rare).
Don’t give up. Communicate with your doctor. Give yourself the best opportunity to find a combination that works for you. I’ve spoken to many people who refuse taking medication for fear of side effects, but medication is an important part of self-management and a balanced care plan, and for me, it’s worth every ghastly side-effect possible to come out of the other side with a combination of pills that allows me to be part of the normal world.
Despite every adverse effect I have had to contend with, it is nothing compared with now having medications that work for me. When it comes to drugs, you name it, I’ve tried it, and in the process it’s probably made me vomit, pass out, cry uncontrollably, or tremble so badly that I can’t hold my own cup of tea.
I lost a month at work because my medications were waging war on my body and brain. But now that everything is as it should be, (within the limitations of my illness, at least), I can do many things that I wouldn’t be able to do unmedicated or without the right medication. Things like getting out of bed, or standing on the platform before the train arrives without wanting to throw myself under the next train that comes. I am able to have a conversation without slurring my speech, or speaking so quickly or with such urgency that I frighten whoever is listening.
Because of my medication, I’m confident in my prognosis, and though I have a life-long condition, I know it needn’t be life-limiting. And that’s worth all the side effects on the list.

Filmmaker
Delaney Ruston's father was lost to schizophrenia and he, along with
the 450 million people globally who have a mental health condition,
inspired this documentary entitled, “Hidden Pictures.”What
is great about this film is that on Ruston's journey to India, South
Africa, China, France and the United States, she spends a lot of time
speaking to mental health recipients, sharing their much-valued
perspectives with viewers.

We
learn through Ruston's travels that human rights violations against
the mentally ill are common, mental health services are lacking and
stigma is everywhere. Services are best in France where recipients
are well provided for in the community and family members receive
counseling. However, the stigma of mental illness has not changed,
whereas families avoid discussing their ill loved ones even with
members of the extended family.

Still,
there is a message of hope. Good deeds do exist in the world, as seen
when a caring U.S. citizen adopts a homeless person with mental
illness after the system fails to provide shelter and care. Ruston
discovers a school in the U.S., perhaps a high school, where the
students learn about mental illness through books and games and learn
to empathize with recipients. Actress Glenn Close has an anti-stigma
campaign, “Bring Change to Mind,” that is battling stigma today.
Former Congressman Patrick Kennedy came out as a mental health
recipient to help fight stigma.

Ruston
speculates that if a fraction of all those who experience mental
illness in themselves, or in their families, started coming out
globally and mobilizing for change, global policies and local
attitudes would have to change. The result would be that individuals
and families would have more support, more resources and feel less
shame.

The
film is only an hour long and pretty fast-paced. It is artistically
done and well worth the viewing. You should see it.

Ever
since I was little I imagined someone coming to my home to take me
away from my family. I never quite fit in with them. It wasn’t that
they were bad people, just different. Now I’m starting my second
year of college in the fall. I suppose I am a young woman (if it
suits you to say that), but in my head I am a child. I see things in
a way that others don’t and am amused by things that others have
ceased to take pleasure in. I have yet to find a way to express
myself understandably with words and with a language many people
choose to communicate with.

They
always called me “different,” and by they, I mean everyone in my
life. I cared about writing and reading.
I would try to talk to family about perception vs. reality during the
1920s about the American Dream in The Great Gatsby, or get their
opinion on Saint George and the Dragon by Raphael, but they laughed
and said no one cares about that kind of stuff.

I
used to want to be normal.
People used to want me to be normal, which was clearly but
inexplicably defined as having friends, spending time with family,
and people being able to decipher whether you’re happy or sad. By
the time freshman year rolled around I realized I was turning into
this bizarre, eccentric, schizoid teenage girl and I was falling in
love with her. I didn’t mind. In fact, I preferred eating lunch
alone in the cafeteria and completing and/or presenting projects
solo. The one thing I hated and loved, and still do hate and love, is
my mind. It never stops and so I began wearing headphones.

It
started freshman year in high school and never ceased. It became a
signature thing. Every time anyone saw me, I had my headphones on and
my music loud. Teachers hated it. They wanted me to point fingers at
my best friend across the room at the mention of partners. They
wanted me to spend the hour completing homework and only read the
allotted reading material by each deadline and no more. But I didn’t
have best
friends, I didn’t have friends and I could not figure out too many
other things to do with my time but read. I didn’t care about
having friends either, about being liked, fitting in. It was
irrelevant.

I
never cared for gossip or small chat and every girl my age did
exactly that so no one talked to me. And so I didn’t talk. I read.
I wrote. Sometimes I’d look up from a book and get disorientated
because I was really in my room or the library or someplace that was
the setting in the book. I joined a book club sophomore year but
sometimes the club members would lose me. I would talk about the
characters as if they were real. I would scribble in the margins,
break the spine and book ear the pages. I would laugh out loud or cry
while reading. I eventually quit because of the awkward looks and
depressing books I suggested that everyone hated.

I
am both happy and sad. I know I should be happy and grateful to be
alive and be healthy and blah blah blah, but sometimes I don’t have
the strength to get up from the kitchen table. I daydream often. For
hours a day and it's one of my favorite things to do. I assumed I
was just different with my flattened emotions and eccentric behavior.
I wasn’t like everyone and it wasn’t something I did
intentionally. It wasn’t something I did to make my mother angry,
friends hate me, or to piss my teachers off, although it often did.
It was and is who I am and I don’t know how to be anyone else. I
didn’t know the things that made me “different” were symptoms
of mental illness.

Things
I’ve learned:

*Make
sure to kiss the boy who makes you laugh, but if he takes you home
and he doesn’t have any books, don’t fuck him.

*Sorry's
are like oxygen masks on high jacked planes.

*Keeping
things hidden is a quick way to isolate yourself and go crazy.

*Fear
of suffering doesn't rule out the factthat
sometimes a person has to die youngas
a matter of principle; such a superhumansacrifice
is no longer beyond my strength.

Note:
Heaven plans to serve two years in the Peace Corps teaching English
in third-world Spanish-speaking countries and after that she hopes to
teach English Literature at a university. NYC Voices and its
volunteers wish her the best.

An Account of My Depression in Southern France
By Francois
I am currently 59 years old. I started working at a semi-familiar company with international customers and wrote my first novel at age 23, and did some law and English linguistics. Then, after a series of heart strokes, I worked in computerized billing at a transport business. Thanks to that, I did a remunerated computer training for 8 months and undertook several jobs for a couple of years.
At one point, I held a job working for a newspaper in the French Pyrenees for six years. Once every week we would work one night in addition to the working day. I had a heart condition and for this reason only did 22 hours on end on such long working days. Eventually I got so exhausted I fainted and could no longer work.
In December 1991, I was diagnosed with depression and started taking antidepressants, tranquillizers and sleeping pills. I was put on a long sick leave for three years and during this time did an interesting psychotherapy based on several cycles of some sort of rebirth therapy, noticeably through the existential, living and social layers of psychic development. Some odd things happened in the meantime. I would be unable to lace my shoes. I dangerously burned myself with an electric heating pad, unaware that I was burning. It was as though I were in a vegetative state, and for a long year was unable to write simple letters. I struggled with agoraphobia, as well.
In 1994, I was declared disabled and settled in Toulouse. A sleeping disorder and vigilance specialist and a psychotherapist resumed my treatment, and have been doing so until now in mid 2013. In this process it appeared I didn’t have a reactive depression but a major depression. Besides my heart treatment, my psychotropic medical treatment consists of two Effexor and one Abilify in the mornings, Victan as a tranquilizer, and at night two Norset and a sleeping pill, Zopiclone.
In 1997, my former boss came to see me in Toulouse. He invited me to a restaurant and told me that I would be welcomed back at the newspaper again. He conveyed that he understood that none of what had happened to me was of my own making but to a great extent the result of the crazy hours the newspaper kept. But it was already too late, because my major depression had become awfully difficult to handle.
In the late 1990’s, I was able to live with a New York retiree here in Toulouse, take some trips, be more active, and indeed write. But in late 2000 we split up, and since then I've been living alone. In principle, given that retirement age for my generation is close to 62 years, I will become a retiree in late 2014.
Because I was a smoker, I developed lung cancer which required surgery. I had a successful left inferior lobectomy and haven’t needed chemotherapy or radiotherapy. I just wish major depression could be healed with the same efficiency. Sometimes, yes, I manage to go out with a few great friends or enjoy long stays with my mother, but this is a very treacherous illness and as soon as I am alone I go down the tubes. Since I live on a modest disability pension with rent relief and my mother’s help, I manage to get along economically, and I must be grateful I only have to send a form every three months, so I am not otherwise subject to inspections.
Not long ago, a non-profit had invited me to run a writing workshop, but I had to let it go because the ups and downs of my illness made it too difficult to handle. So I really can’t work, not even for my pleasure, and I keep being subject to agoraphobia so the shortest walk on my own becomes hell. I need to be in the company of a friend to enjoy a walk.
I have given up the hope that I will be able to know a true life in the company of a woman I would love. The only person who is ready to share my ordeal so far is my mother and I plan to live with her. I still hope to build a circle of friends thru which to enliven my relationships and enrich my own life.

Depression
and anxiety have been the bane of my existence since I was ten. I
grew up with few friends, no family confidants, and a crippling sense
of loneliness. Social isolation and darkness followed me into my
thirty-first year, where, mangled by the stress of a PhD program (in
psychology, no less), and incapacitated by the pain of living moment
to moment, I became obsessed with suicidal thoughts for weeks.
Finally, the taut wire of my equilibrium snapped. I attempted suicide
and landed in the psych ward on the top floor of one of Chicago’s
best hospitals.

I
was angry. My admittance, while “voluntary,” was actually just an
alternative to being arrested. I did not belong there. After all, I
had been managing this pain for years, and although the pot had
finally boiled over, I believed that I could bring it under control
again. My denial and lack of insight were shattered during the next
five days, however, and in the best possible way.

The
transformation began when I acquainted myself with some of the other
residents. My roommate, suffering from depression like me, was a
large crack-addicted black woman, prostituting to support herself.
Her boyfriend stole copper wire for a living and sold it for what she
said was “big money.” She was also funny, caring, nurturing, and
I loved her the most.

Those
of us who were depressed were in the minority; the ward was full of
people suffering from psychosis. T was a delightful Irish woman in
her mid-fifties who had “adopted” another resident, an elderly
woman in perpetual confusion. T was convinced that her husband and
daughter were keeping her there against her will and that the people
on television were lying about the real date. She was capable of
carrying on a lucid, even intelligent conversation, and at times I
wondered whether she was psychotic at all. But then I would hear her
at night, sitting on her bed in her room all alone, wailing. “God
help us all!” she would yell. “Let me out! Why won’t they let
me out?”

R
was a large Mexican woman, missing both legs from the knee down, who
would roll around aimlessly in her wheelchair, with a big toothy grin
on her face. Many times I saw her sitting motionless, carrying on a
conversation softly in Spanish, with someone I could not see. Also,
she refused to wear pants.

These
women were just a few of the colorful characters I met. At first I
was scared because a number of them were underprivileged or homeless,
malodorous, and plain incomprehensible and I felt that I was on a
higher, saner level than everyone else. But I quickly learned that
they were considerate, funny, and very likable, and the one thing we
all
had
in common is that we were human, which is easy and dangerous to
forget. Being diagnosed with a mental illness can be a very
dehumanizing process; others tend to equate your illness with your
core personality, and they may treat you as that illness until you
internalize it and dehumanize yourself.

The
staff in the hospital treated us like the disorders they thought we
were, not people at all, and by day two, I felt like the crazed
lunatic that I swore I was not on the first day. Ironically, it was
the other “lunatics” who brought me back to earth, and reminded
me that we are all individuals, with unique personalities, worthy of
consideration and respect. They showed me the light at the end of the
tunnel, which I reached a couple of months after I left.

I
was prescribed Zoloft and Lamotrigine, a mood stabilizer generally
used to treat Bipolar Disorder. I had never taken a mood stabilizer,
although I had been on plenty of different antidepressants. My doctor
must have gotten it exactly right with this cocktail; after two
months of continued depression, the world brightened suddenly.
Everything changed for the better: My attitude, my goals, my
relationships. I do not believe that these changes were one-hundred
percent due to the medication, rather, they jump started my recovery
and I gained momentum as I made changes along the way. It saddens me
a little to know that I never really experienced happiness, or what
other people consider a normal life, before now.

For all of my resistance and anger, I am grateful
for my visit to the psych ward. I met delightful people who, just by
being themselves, taught me about myself. I also met a wonderful
doctor who started me on the path to recovery. To anyone who is
struggling to make it through life, I recommend this: Seek help, even
if you think you do not need it. It may be the best thing that you
ever do for yourself.

“Eyebrows
and Other Fish” is a self published book written by a mental health
consumer from England. I found the book to be both extremely
impressive and interesting.

The
impressive parts of the book is what I found to be the amazing
insight Mr. Scally has into his schizophrenia, its manifestations and
consequences. The truly impressive part is his keen awareness of the
full picture even when he is going through the worst of his symptoms,
including extreme paranoia and obsessiveness, for example. He is able
to identify when he is being paranoid and obsessive, and can relate
it in full detail, which I will give a partial example of later.

Mr. Scally
also does an excellent job when it comes to defining what he is
facing and what he has to deal with when going through an episode.
One example is that absolutely everything he reads, hears or sees
takes on added significance and he must analyze it backwards,
forwards and sideways. Things such as advertisements, license plates
and colors all have special, important meanings that must be figured
out. It becomes a mission to him.

The
interesting parts of the book to me are the details of the thought
patterns that go on while Mr. Scally is going through an episode.
Just one of the many examples in the book is as follows: His
girlfriend’s mother had given him a present of aftershave with the
word BOSS on it (I’m assuming Hugo BOSS). This immediately got Mr.
Scally to thinking this was a way of the mother letting him know that
his girlfriend was sleeping with her boss and that is how he got the
crabs he had just contracted a few weeks ago, and that this was her
way of warning him about her daughter. Or perhaps, he then thought,
the gift was the mother’s way of saying that she was the boss and
that she holds all the cards. Then his thoughts raced to the
possibility that maybe BOSS stood for something, perhaps “Back Off,
She’s Sorry,” or “Brain Operation Soon, Scally.”

This book
chronicles Mr. Scally’s life from 1990-2006. During this time he
has many good phases and some dark ones, too. As with many people
that have psychiatric disabilities, he has stopped taking his
medications on numerous occasions, and that is usually when his
symptoms started to reoccur.

It would be
so easy to condemn Mr. Scally for ceasing to take his medication
while they were obviously working, but once again, he does an
excellent job in explaining their debilitating side effects. He
writes that, in addition to the various side effects he suffered,
from muscle stiffness, Parkinsonism, erectile dysfunction, constant
dry mouth and sedation, that the medication also “impedes my
momentum for life itself.” After reading that, it is very easy to
see the struggle of medication vs. side effects.

I did not
even get into Mr. Scally’s childhood, which sadly was horrific, nor
his support system, which between his girlfriend, social worker and
advocacy group is for the most part pretty good. You’ll have to
read the book to find out more, which I totally recommend you do.

Undercover Nutcase
By Heather
Adventures in Creative Thinking
My name is Heather. I am twenty-five years old and have lived almost my whole life in Connecticut. I graduated from high school in the top ten percent of my class, started at the University of Connecticut in one of the top three academically challenging programs and graduated five and a half years later, with a major and a minor. During middle, high school and college I was strongly involved in volunteering, community service and student organizations, often considered the quiet leader (or very outspoken leader toward the end of college). I have worked off and on since starting college and am known for being one of the best workers in the office, when I do work. One job I have always held is an Official Undercover Nutcase.
My current diagnoses are borderline personality disorder, schizoaffective, post-traumatic stress disorder and generalized anxiety disorder. I started therapy at age fifteen, but have lived with mental illness much longer. One running theme my life follows is that no one seems to notice that I am mentally ill. I move through the world with everyone thinking I am "normal." When I am hospitalized other patients don't believe that I have the diagnoses that I do. I recently told one of my aunts about my schizoaffective and she remarked that I seem so normal and well-adjusted, she had no idea. My whole family and most friends have no idea. This has led me to feel like a secret agent in my own life.
Every morning I put on my "normie" uniform and see family, friends, co-workers, the public and none of them are the wiser. Sometimes the uniform is comfortable, but other times the paranoia, anxiety, hallucinations (auditory, visual and command), depression, flashback and triggers make the uniform feel like itchy wool in the summer.
Aside from the uniform, there is always the idea that my cover may be blown. At my last paying job, I was sure I would be found out by my supervisor. More than once my supervisor made demeaning comments about the people seeing the talk therapist that shared the building with our office. I was placed there by two organizations working with disabled people and have no visible disabilities. Even after I was sexually assaulted by a co-worker I was able to keep my cool outwardly, although inwardly I was screaming.
My demeanor has changed since then, probably because of the mood aspect of the schizoaffective. At my current volunteer job I am the go-to person for the impossible projects, though I have been there less than a month. More than once I have been told they weren't even sure if the project could be done, but I did it. I am still mostly quiet, but I have mentioned an idea I had in a hypomanic state. Luckily it just looked ambitious instead of insane. I am less worried about being found out here, but am worried about the day that I will be too depressed, too schizo, or have someone set off a trigger to make it that I can no longer be there. If and when that happens, I will go back to headquarters, have a brief sabbatical and then be sent on another mission to infiltrate another organization for The Institute.
Undercover Nutcase Heather, signing off.

Losing Our Minds Over Mental Illness
By Reginald Coleman
We Must Evolve Our System of Thinking
Nearly a year has passed since the December 2012 massacre in Newtown, Connecticut where twenty prepubescent children and six adults were savagely killed by a mentally ill gunman, and the Washington political culture has jumped out of their cushy seated slumber. With President Obama’s taskforce to curb gun violence activated, nearly two dozen formerly opposed politicians are quickly favoring a bill to ban assault rifles.
To date, 2013 has seen several more fatal incidences involving guns in the wrong hands. While talk for stricter gun policies continues, what about addressing our nation’s mental health policies?
In light of recent mass shootings by mentally ill men the fury of debate sweeps across America concerning guns and mental illness. Gun lobbyists and the President seemingly agree we need to create better laws to keep guns out of mentally ill hands. Existing federal laws prohibit anyone who “has been adjudicated as mentally defective, or has been committed to a mental institution” from purchasing a firearm. Observing the above mentioned statute, considering many Ground Zero first responders, survivors, police, firefighters and military veterans, have filed claims for post-traumatic stress disorder, a mental illness, little thought was put into drafting the law prohibiting mentally ill individuals from buying guns. The same lax, irrational, problem-solving mentality continues.
NYS Senator Kathleen Marchione and other gun advocates are speaking out to have mental health policies addressed. They claim guns aren’t the problem, but the hands they end up in, stating we must keep guns out of mentally ill hands, whom they claim are more violent. According to statistics, the vast majority of violent crimes are committed by those who are not mentally ill, and the mentally ill are 12 times more likely to be victims of violence.
Our country is at a crossroad of its “civil health,” our collective conscience deeply shaken by these events. A social attitude change about gun use similar to the one about public smoking, and drinking and driving, has evolved the past three decades.
The abolitionist and women’s suffrage movements were born of social indifference and intolerance to the subjugation of fellow Americans. However, this parallel consciousness doesn’t exist between the growing movement for gun law repeal and the push to improve mental health policy. The push to repeal current gun laws can be affected by the social attitude of intolerance.
On the other hand, the push to repeal the current mental health policies cannot be sufficiently affected by a social attitude of indifference, an attitude which has allowed our mental health systems to deteriorate, so often leaving those living with mental illness and those caring for them to be overlooked, ostracized and fending for themselves.
We cannot continue this current culture of ignoring the mentally ill and side-stepping the need of mental health policy growth. We need comprehensive mental health services and a mental health system based on transparency and compassionate treatment. We must recreate a system of care that inspires the mentally ill to seek needed treatment and those who care for the mentally ill to feel comfortable reporting relapses or changes in behavior. More importantly, there must be a social attitude change toward the mentally ill. The social and political move to improve mental health care must be a distinct movement. It cannot ride on the back of the gun law repeal movement. Both movements are inherently different.
Will this social attitude of understanding and compassion for the mentally ill take root now? Or will the outcry for gun law repeal overshadow the need to reverse the current mental health trend? Will this be another case of political pandering? Will the sound bites and blame game of the NRA and the gun law repeal advocates relegate the important issue of mental healthcare to the cellars of our social conscience once again?
Mental illness is not like a cold or flu. We don’t catch mental illness from one another. Although some mental illness is hereditary, there are no solid predictors. In fact, mental illness is often experienced by those whose parents have no history of mental illness. In many cases, the illness is brought on by childhood trauma or other psychological traumas in adulthood. There are also cases of “psychotic disorder due to a general medical condition and substance-induced psychotic disorder” whereby there is a prominent and persistent disturbance in mood caused by drug abuse, medication or toxin exposure. So, who is to say “it will never happen to me,” or that it hasn’t already begun to happen?
Mental illness is not “his/her problem”—it is our problem, a human problem. We must solve it with humanity, compassion and a sense of fellowship. We have a responsibility to ourselves. So, as we push forward to evolve in our thinking and treatment of the mentally ill, we must stay mindful of what we stand to lose.

I’m Not Mentally Ill, I’m Just Different
By Eddie
I was in college and spent a lot of time experimenting with different substances, culminating at the point where I took a large amount of the main ingredient in Robitussin. It made me feel like I was the Creator of the Universe, freaking out the kids around me as well as my girlfriend. She broke up with me the next day, wanting me to get some help.
I checked myself into the hospital, missed an entire year of college, and began a regimen with various medications, from Risperdal to Geodon, all of which did a number on my body. That was 2002.
Much has happened since then, but it was mostly about me adjusting to the different medicines until I found the right combination that sort of worked for me (although my energy is not up to speed and I’m having problems with sexual functioning).
I was diagnosed with schizoaffective disorder in 2004, and have been on SSDI (disability benefit) for quite some time now. I’m a musician, and my dream is to make and play music about real issues in the world. I’m introspective, a deep thinker. However, I do hear a voice in my head, but it’s my own thoughts.
In my opinion, I think everyone has a voice in their head, but it’s a matter of how prominent that voice guides your life versus moving and using your body in the physical world. At what point does the voice of your thoughts command the things you do, and at what point are the things you imagine not socially acceptable to the ordinary world? In a time when life seems to be evolving at an accelerated pace, whether positively or negatively, what is the fine line between, for example, praying to God, and talking with God? The former is done in churches, and the latter lands you in the psych ward.
I believe my real illness is not schizoaffective at all.
This mark of a diagnosis that people use to pigeonhole and label you to fit in their box is their preconceived notion of reality. My real illness is that of Resistance, letting my mind linger on the things I care about, such as music. And I also desire to be situated in a better creative environment, rather than living with my family at thirty years of age. This is something I’m working on.
With my deepest willpower, I will eventually have the life I want to live and wean myself off of these meds so I don’t have to suffer through the side effects. Every human mind is infinitely different from others, yet we all share a communicative space with similar bodies. I am not mentally ill at all, just different. If I work hard at the things I do best and love, my dreams will be realized.

Bruni in the City: “Falling Out of Love”
By Christina Bruni
Like a Bad “Air Supply” Song
I fell out of love with the Holy Cannoli guy. It just happened that way. I was all out of love, just like the singer sang in that bad Air Supply song from the 1980s. He couldn't live without her, yet he had no love left either.
I have a problem attracting guys who can only see me at certain times because they're unavailable every week. One guy was a Tiger, and I'm a Snake. That makes us mortal enemies, according to Chinese astrology.
How could someone, a woman no less, fall out of love with a guy, when it's usually the guy who doesn't return calls and does an abrupt fade?
I'm not proud of this break-up. I recommend you screw up the courage to tell the person gently, "The feeling I had isn't there anymore. We were romantic. Now I'm uncomfortable just being friends after we dated."
That guy asked me what was up. "I'd rather you didn't call me anymore," I told him point blank. "Okay," he said. And hung up.
Ladies, it's a crock of bull to want to remain friends with a guy after you've been lovers. I tried that with a guy who thought we could return to being good friends. Did I really need to know the intimate details of his current love life? He didn't get it, and I didn't enlighten him either.
The recent guy and I hit it off, and that was the problem. I realized that if I could get together with him, I could find another guy if I wanted. Oh, I wanted it to work out. He was a good guy.
Last July, I joined chemistry.com. About every two weeks I get a "Christina, you've been noticed by him" email message in my inbox.
A psychic told me I'd meet a guy I had never met before, and he'd be divorced and the attraction would be solid. Could it be possible "Mr. Right" was on the way?
My latest goal is to upload circa now 2013 photos to the dating website. I'm an eternal optimist and a hopeless romantic. Chemistry.com is much better than the dating website for people with mental illness.
A guy on that site almost 10 years ago told me in his second online message, "I don't want to be friends...I expect sex," like I was some kind of inflatable vagina-of-the-month play doll. We hadn't even met or corresponded.
I know two people with mental illness who met each other on chemistry.com. Neither of them knew about the other's pharmacological history when they dated until they decided to get engaged and spill their secrets.
The point is this: There's more to life than your diagnosis. I signed onto chemistry.com because it matches people based on four personality types. I'm a director, and (ahem), "Sparks fly in the bedroom between two directors." I'm still waiting for that to happen with the right person.
To all the guys I've loved before: You deserve better than a woman who ends her column paraphrasing a Julio Iglesias song.
What is it about bad love songs? Does getting to the church on time terrify me like it does for the guy in "Modern Love" by David Bowie? And yet, I want to find my number one, not a one-hit wonder. When that happens, I'll gladly take down this column and keep things private.
I'll report back soon whether my Summer in the City sizzled or fizzled out. Ciao for now.

Employment Tips for Job-Seekers:
By Carl Blumenthal
How To Be Successful Whatever Stage You’re At
Since the age of 16, I've had 26 paying jobs, including full-time, part-time, and summer positions, lasting from one month to five years. Given I'm now 62, that's a lot of employment experience. Those jobs have varied from washing dishes and being a building porter to writing for a newspaper and running a merchants' association. And from 2002 to 2005, I was a job counselor for Network Plus, Baltic Street AEH's assisted competitive employment (ACE) program.
As someone living with bipolar disorder, I'm lucky that my hypo-mania has meant long periods of great energy on the job, and cursed that my depressions resulted in six or seven years of unemployment.
Currently, thanks to Network Plus, of which I'm a client in recovery after my latest blues, I'm a part-time peer advocate at Baltic Street AEH (Advocacy, Employment, and Housing). In other words, for the umpteenth time in my life, I'm starting over; something I never think I can do. This is an important part of my story and I hope it is of yours, too.
Here are my tips for getting hired:
1. The job market is tough enough to face alone, so get help. The Coalition of Behavioral Health Agencies has just revised "The WORKbook: A Guide to New York City's Mental Health Employment Programs." Call 212-742-1600 for a copy, or find it online at www.coalitionny.org. The booklet provides information about services offered throughout the five boroughs. Baltic Street AEH's Network Plus, where I receive help, is one such program, with locations in downtown Brooklyn (718-797-2509) and Borough Park (718-377-8567).
Services at these programs usually include assessment of your readiness to work, and designing a personalized plan to identify employment goals and achieve them, including how to acquire necessary training or education. Support from staff or other consumers is often available for seeking a job that can run the gamut from volunteering and internships to various kinds of paid, part-time and full-time positions, either working with mental health peers, or in so-called "competitive" jobs.
Be advised that participation is not a quick fix. Don't be disappointed if it takes months rather than weeks to find something. Many unemployed people without mental illness have been looking for several years. But, as with everything else, persistence pays off. Then, these same programs can counsel you as you face challenges on the job.
2. Have a passion and follow through. Sure, there's drudgery on every job, and maybe I've been lucky with my choices, but I can honestly say I've loved every one of them, and worked like my life depended on it, which it does.
The question is always: "Well, what's realistic, say if I don't have much education or experience due to my illness or other extenuating circumstances?" Here's where it helps to create short-, mid-, and long-term goals.
For example, you like to grow things on your windowsill. First, you might learn more about new plants you could try. Then, about indoor plants in general. Next, join a community garden, learn from your neighbors how to plant veggies, and save yourself some money. Or try courses at one of the city's botanic gardens. They're more expensive, but have led many people to gainful employment.
Or maybe you're that compulsive person who likes to keep things neat and clean. Try hiring yourself out to relatives and friends as references for a cleaning company. Obviously, neither of these examples represents an overnight solution. But, how long have you been unemployed? You have to start somewhere to get somewhere.
3. It's what you know and who you know. Education, training, or on-the-job experience builds knowledge and skills. That goes without saying. However, knowing the people who either directly or indirectly know about job opportunities is still the best way to gain employment. This is how I've obtained almost all my jobs.
Unfortunately, many people these days spend countless, unsuccessful hours scouring the Internet for openings, and, if they're conscientious, tailoring their applications and resumes to those positions and the companies offering them. So, if you don't have much experience using the Internet for this or other purposes, you may not be at a great disadvantage. The above kind of employment services can help you learn more about the Internet.
Compile a list of everyone you know who is employed and talk to them about who they know who is in the know about job opportunities. Again, a job counselor can help you with this, but you need to do the legwork.
4. Looking for employment is a full-time job. How many times have you heard this? And who wants to hear it again when they're having symptoms of mental illness that interfere with their motivation, energy, concentration, or articulateness?
Here your treatment team (for both physical and mental health) and any peer support group are all-important. The other wellness dimensions are also key. While you're focusing on the occupational, financial, physical and emotional dimensions, don't forget the others: environmental (especially housing), intellectual and spiritual.
Performing your favorite activities can reinforce the energy needed to tackle the job search. And the more you're meeting people who engage in the same activities (that social dimension), the more likely you'll find someone who knows the right someone for a job.
If all this wellness talk sounds overwhelming, there are aids to help you, such as Mary Ellen Copeland's "Wellness Recovery Action Plan" (WRAP). Network Plus uses a wellness assessment during its initial intake and will make appropriate referrals to assist you.
5. Just as recovery from mental illness is a lifetime process, with many starts and stops, so employment can be here today, gone tomorrow. This is true for everyone, whatever obstacles they face in life. As I stated above, motivation and persistence are essential.
But, allow me to contradict myself a bit. You may try for a job, succeed in getting one, and decide that this job, or employment in general, is not for you. Please don't conclude this is your fate. Be honest, with yourself and your counselor, about what you liked and disliked during the process, so you can learn some lessons. Maybe devote yourself to other dimensions of wellness to boost your confidence for future job searches.
Most of all, don't give up on yourself, whatever you decide to do. I've done that too many times in my life and it made recovery all that much harder. I'm thrilled now to be part of that stream of humanity from my neighborhood heading to the subway every morning for work.

How to Find Disability-Friendly Jobs on Craigslist.org
There is a way to find jobs on Craigslist where people with disabilities are encouraged to apply. First, visit Craigslist for the city in which you want to work. Under Jobs, click the appropriate sector where you want to find jobs (for example: admin/office or nonprofit sector). In the search box at top of the next page, type the word “disabilities.” You will get a list of job openings by date. Select one and scroll to the bottom of the page where you will see a number of bulleted items. Look for a bulleted item that says: “OK to highlight this job opening for persons with disabilities.” Although this does not guarantee a friendly work atmosphere for people with psychiatric disabilities or that the employer will provide “reasonable accommodations” to ensure that you are comfortable there—it is more likely that the employer will be sensitive to those issues than those postings that lack said bulleted item.
If you are still not sure how to go about this, send an email to newyorkcityvoices@gmail.com and someone will walk you through it. Thank you Craig, founder of Craigslist, for allowing employers to specify that they welcome disabled applicants. Good luck in your job search. Let us know how it goes.

Our Experience at the NYC Creating Wellness Fair
By Jen Cohn, BS, CPRP and Christina Serrano, BS, CPRP, Wellness Trainers, CSPNJ Institute for Wellness and Recovery Initiatives
On Tuesday, June 25, 2013 we attended the first annual Wellness Fair at the Harlem YMCA located at 180 W 135th St. in New York City. The event was coordinated by an energized team through the leadership of Carlton Whitmore, Jody Silver, and Sharon Niederman from the NYC Department of Health and Mental Hygiene (DOHMH) Office of Consumer Affairs, along with a variety of community based organizations, including NYAPRS, Baltic Street AEH, Howie T. Harp, New York City OMH Field Office, in addition to technical assistance by Peggy Swarbrick of Collaborative Support Programs of New Jersey (CSPNJ). It was so exciting to be part of this wellness community. Despite the 90+-degree heat, approximately 100 people attended the event, which was scheduled from 10am-3pm. The program included opening remarks by Jody Silver, Director of the DOHMH Office of Consumer Affairs and Colleen Mimnagh, a peer support specialist with NYAPRS. Presentations were made by staff from the DOHMH Take Care NY Campaign, and the Bureau of Chronic Disease Prevention and Tobacco Control. Presentations included an overview of wellness in the 8 dimensions by Dr. Peggy Swarbrick, and presentations by Rebecca Lee, a physical activity coordinator, on sugary drinks and nutrition, and by Jenna Ritter, who talked about yoga for healing. There were several other stimulating workshops, including drumming and healthy eating. The gym floor was filled with vendors sharing information on diabetes, smoking cessation, controlling blood sugar, etc.
How refreshing to attend a health event and view wellness through different lenses. Christina discovered Mike Veny, an “outside the box” presenter using drumming as a tool to engage recovering individuals.
Christina on Drumming at the Fair
Drumming peaked my interest, being of Puerto Rican heritage with a family of percussion players. After talking with Mike, I decided to attend his workshop. Overall, I was intrigued and energized by this great workshop in a comfortable room where a circle of people played various percussion instruments, rain sticks, djembé drums, and others I couldn’t readily identify, but sounded amazing. I chose a big beautiful djembé drum.
Mike spoke of his mental health journey and inspiration to share his talent, easily connecting with the 20+ participants who acknowledged his challenge facilitating a workshop while working through severe anxiety. Mike got us out of our seats for a “rhythm test” icebreaker. He played cowbell as we walked to the beat, found a partner, struck funny poses, and screamed out loud when the music stopped.
Then we sat down to make our magic. Mike conducted with hand gestures to stop, or “bring it down” to a quieter sound, encouraging us to create our own music and connect with one another.
Shy curious participants, myself included, were confident drummers by workshop’s end. Everyone had a solo and we drummed our appreciation. We each shared what we learned and felt. Everyone smiled, having shed our daily stress.
Mike conducts drumming events across the country, such as employee team building workshops and large conferences of several hundred people. His website testimonials speak for themselves (www.transformingstigma.com). I am now among those who love to drum their feelings.
Jen on Nutrition at the Fair
I attended an eye-opening nutrition workshop run by Ruth Chiles R.D., CDN. Ruth opened by handing us paper plates and asking, “What did you have for dinner last night?” instructing us to draw last night’s dinner. It seems the old food pyramid has been replaced with a 9-inch plate, ¼ portion for protein, another ¼ for carbohydrates, and ½ for vegetables, or a combination of fruits and vegetables. We should be eating a rainbow—a variety of non-processed foods, especially fruits and vegetables—meaning you’re getting a greater variety of vitamins. (See Choose My Plate, http://www.choosemyplate.org)
We discussed what we should eat and how we should eat it. Surprisingly, eating Chinese food straight from the container is a bad idea. Question: How many servings of food would be in Ruth’s pint of vegetable fried rice (carbohydrates)? The audience screamed 5! No, 10! Answer: A pint of Chinese vegetable fried rice holds about 5 servings of rice. That’s enough to fill up 5 meals worth of carbohydrates on your plate. Ruth emphasized most people eat half a pint (out of the container!) or may eat it all as one meal. By eating from your plate, you’ll eat less than the whole container.
Finally, we checked our plates to see if they matched the serving recommendations. Good news! Most folks ate the recommended portions. I left the workshop with newfound knowledge.
The overall take-home message of the fair was this: Do what makes you healthy, happy and well. Eating healthy, exercising and using constructive outlets for emotional balance are good for everyone, though the path of overall wellness varies per individual. Whether yoga, drumming, quitting smoking, or eating more nutritiously, the path to wellness is an inspiring journey.
Note: You can contact NYC DOHMH Office Of Consumer Affairs, (347) 396-7194 or Bfoster@health.nyc.gov. They also have a wellness list serve that promotes wellness information and resources: wellnessworks4us@yahoogroups.com

I
was born into a family of seven in Minnesota 60 years ago, then moved
to Pennsylvania in 1964 where
I developed many friendships of all ages over the years. I
attended high school in a Pittsburgh suburb and excelled in both
academia, sports and extracurricular activities. Upon graduation I
was accepted at Yale, Dartmouth, Princeton and Notre Dame, to name a
few. I chose Princeton.

My family was not wealthy and so I
needed to work on campus and take out quite a few loans in order to
matriculate. I did have a partial scholarship, but since my four
sisters and I were born within five years of each other, we were all
in universities simultaneously, which caused an extreme financial
burden on the family.

I also played sports and majored
in English Literature. My freshman year I lettered in both football
and crew. My grades were not good, as I was stretched pretty thin and
also was experimenting with grass. And I had a required withdrawal at
the end of my freshman year.

With
the help of my dad I got a job on the Great Lakes as a Merchant
Marine, which paid well enough for me to return to Princeton after
another lapse. I was still smoking grass and began smoking
cigarettes, too. It was the 1970s and my hair was really long. While
out of school I waited anxiously for my draft number. The Vietnam war
was still waging. Luckily my number was high.

I returned to Princeton University
in New Jersey and did better in school, quit football but still rowed
Crew which was very strenuous. I also joined Tower Club and
started drinking a lot there. The legal age was lowered to 18 while I
attended, much to my detriment. I had a girl friend I professed to
love who was a little older than me and was going to Rutgers after
undergrad work at Vassar.

My Junior year I was still rowing
crew and again doing poorly in classes. During this time my mom was
dying of cancer and my sibs were still in college. My dad wanted
me to withdraw from the school I loved. Plus I had marriage plans. I
got a case of poison ivy while working a summer job on campus and was
treated with cortical steroids which I was allergic to. That, the
drinking, and use of grass and the pressure caused me to have my
first breakdown. I went into convulsions. My father came in from
Pennsylvania and he and my girlfriend drove me back to Pittsburgh,
since I would not be allowed on a flight being incoherent and so
debilitated from the spasms. I remember lying on the back floor of my
girlfriend's car in agony as my dad drove us back to Pittsburgh; it
felt like my brain was on fire and lit up like a klieg light.

I ended up at Western Pennsylvania
Institute and Clinic (WPIC) and was diagnosed with schizophrenia. My
current diagnosis is schizo-affective disorder. I have been
hospitalized some 20 times over the years, even in state institutions
such as Mayview.

My mother died after I left
Princeton. I was heavily in debt and defaulted on my loans. Years
later, through perseverance, I paid them back with interest,
established credit and worked at many different jobs despite having
additional breakdowns. My family really didn't help me out at all
during that time. Not one of my siblings visited while I was
hospitalized. They all are married with happy existences.

At the present time, I am happy
with a girlfriend and two cats which are like our children. My family
is more accepting of me now that I am well. I gave up drinking years
ago as well as smoking. I went back to night school at The University
of Pittsburgh and graduated with Honors with a degree in the
Humanities, a major in English and minor in Philosophy, while working
full time. None of my sibs came to my graduation ceremonies.

My dad died too young, just after
retiring.

Although now I enjoy fishing with
friends, playing board games, cats, pottery and poker, cooking and am
pretty much a homebody, I was always underemployed, and often worked
for minimum wage. Now, I am on disability for my chronic illness. My
last hospitalization was two years ago.

It
seems the medicines just fail to work at some point, but I know my
symptoms and generally go in voluntarily. My
current medications are Saphris and Depakote. I
see a psychiatrist regularly every three months.

Landmark Settlement for New York City Adult Home Residents
By Jota Borgmann, Senior Staff Attorney, MFY Legal Services, Inc.
State to Fund At Least 2,000 Units of Supported Housing for Residents
On July 23, adult home residents in New York City reached a landmark settlement with the State of New York. The settlement ensures that thousands of residents of 23 large adult homes (see sidebar) will have the opportunity to live in their own homes with the services they need to succeed and be part of their communities.
The settlement follows nearly a decade of litigation in a related case, Disability Advocates, Inc. v. Paterson. The new case, O’Toole v. Cuomo, was brought by residents of three adult homes on behalf of approximately 4,000 residents citywide. The plaintiffs alleged that New York State unnecessarily segregates people with mental illness in adult homes in violation of the Americans with Disabilities Act (ADA). “This case puts a face on people with mental illnesses and our struggle to be integrated back into the community at large,” said Plaintiff Steven Farrell, a resident of Oceanview Manor Home for Adults in Brooklyn. The settlement offers adult home residents “freedom and the ability to grow,” said Plaintiff Raymond O’Toole.
The State agreed to fund at least 2,000 units of supported housing for adult home residents, and more if needed. Every adult home resident who qualifies will have the choice to move to community housing within five years. Supported housing is an apartment in the community that comes with rent assistance and support services. Residents can live alone or with roommates if they choose. The support services may include visits from case managers or help with moving, healthcare, shopping, medication, or personal care.
Many adult home residents are excited about finally having the opportunity to move out of adult homes and have more freedom and choice in their day-to-day lives. “I’m thrilled about this settlement,” said Plaintiff Ilona Spiegel. “At my adult home, they don’t do anything to inspire you or encourage you to move forward. I know how to take care of myself. I want to work my way back to independence.”
MFY Legal Services, Inc. represents the adult home residents with co-counsel from Disability Rights New York, the Bazelon Center for Mental Health Law, New York Lawyers for the Public Interest, Urban Justice Center and Paul, Weiss, Rifkind, Wharton & Garrison, LLP.
Adult home residents in New York City who have questions about the settlement may call MFY toll-free at (877) 417-2427.

[Sidebar:]
The settlement will affect residents with serious mental illness living in these 23 adult homes:
Belle Harbor Manor
Brooklyn Adult Care Center
Central Assisted Living, LLC
Elm York LLC
Garden of Eden Home
Harbor Terrace Adult Home and Assisted Living
Kings Adult Care Center
Lakeside Manor Home for Adults
Mermaid Manor Home for Adults
New Gloria's Manor Home for Adults
New Haven Manor
Oceanview Manor Home for Adults
Park Inn Home
Parkview Home for Adults
Queens Adult Care Center
Riverdale Manor Home for Adults
Rockaway Manor HFA
S.S. Cosmas and Damian Adult Home
Sanford Home
Seaview Manor, LLC
Surf Manor Home for Adults
Surfside Manor Home for Adults
Wavecrest Home for Adults

Editor-At-Large/As I See It
By Marvin Spieler
“I Have an Illness...Shit!”
I came down with mental illness when I was 16 years of age. It wasn’t until age 36 that I learned how to and want to break out of the revolving door. Twenty years lost. I couldn’t develop a real career. I wanted to be an urban planner or a high school teacher. I became neither. I was a professional mental patient. That was my career.
So many hospitals. I was advised to write The Patient’s Guide to Psychiatric Hospitals. I thought about it and said no. Living it was one thing, writing about it would have been harder.
You can fight the revolving door of hospitalizations. I fight my illness every day and WIN! It’s not easy. At times I’d like my three meals a day handed to me by joining the chow line at a psychiatric hospital. That’s the easy way. NO! NO! NO! I fight. What do I do to stay out? I’ll tell you: Here goes!
I don’t like to wash up and shave. But I do it! It’s a pain in the ass. I don’t want to look like a bum. I then feel self-conscious as a result. People look at you strangely. What are they thinking about me? So I shave as often as needed!
I don’t like going grocery shopping, cooking, and washing dishes after every meal, every day so I can eat! But I do it.
I don’t like taking my psych meds twice a day. I don’t even like setting up my week’s supply of meds in my pill containers! Why? Because it reminds me of my god-damned illness! An illness the public fears. They think we’re violent. In reality, I can’t fight myself out of a paper bag! Violent? Me? That’s a real joke! Yet, if I tell a potential friend I have mental illness, guess what? He or she may not return my calls or see me again! Now that’s an illness I have to live with! They may start to fear me. They may not want to turn their backs on me for fear that I may slug them. My friends are limited as a result. I cherish the ones I have.
Because of my illness, I never had a good paying job. Why? I feared success! Success made me feel uncomfortable. Tension, anxiety would result. I’m shy. I’m not a people person. In this day and age, you’ve got to be a team player. I’d rather work alone. You need to be a “people person.” I’m not. I don’t interact as well as I would like.
Look, it took most of my work-a-day-life to overcome fear of success. By the time I conquered this problem, I was too old to get a real paying job.
You may say he means fear of failure. Most people who don’t succeed have this. Not me. Success was always mine to a point. Then I’d quit, get fired, or become psychotic.
Yes, the illness gives me limitations that hurt me! Not someone else. I’m feared. Ha!
Housing! Tell me about housing! I had a subsidized apartment till recently. What happened? The rent kept on going up but the subsidy didn’t. I had to move in with a friend. I couldn’t afford to live even in Newark, New Jersey! My check isn’t enough to pay rent, food, and other essentials.
Depending on your personal viewpoint, the above article may sound negative. However, to me I have a great deal of accomplishments. Whether I like taking my meds or not, I take them daily. It is now in excess of twenty-five years on medicines. I call the process being Hospital-Free. A record I’m proud of. As a grown-up, there are certain things you must do to be able to call yourself an adult. I mentioned a few. I’m happy with myself. I became an advocate for mental health. I do think positive usually. Success is no longer a problem. I’m a doer. I’m proud of who I am.
My advice to you is this. Take your meds if prescribed. Develop a support system that works for you. STAY HOSPITAL-FREE. When you feel comfortable with this process, then you’ll go on to achieve your goals in life!

Ward Stories
A column organized by Dan Frey, Interim Poetry Editor
In this edition of Ward Stories I am pleased to present two powerful poems. DeAnn puts the struggle of a single mother to poetry while Chaim shares his experience of love with a fellow consumer/survivor in rhyming verse. Enjoy.

First Born Son
By DeAnn
Once a bright promise
Star of our eyes
And hearts,
His mind broke,
Into disorder.
The cold hard stone
Of sorrow
Dropped,
Sending rings
Of disappointment
Ever outward.

His father,
My husband,
Died years ago,
Broken-hearted.
His sister
My daughter has
Stood long in grief’s shadow,
I ask for her forgiveness.

Blinded with pain
I prayed
For God to pull me
From the smoke and ash,
I prayed for Him
To wash away the grime
Of sorrowful days.
I didn’t even see that
He was there all along,
Patiently holding me up
Waiting to breathe
Hope’s holy light
Into my darkest hours.

I Will Stay By You Always
By Chaim
Your depression, not unlike a heavy fog.
Like the stench and gloom of industrial smog.
We both just want it to go away.
And you are too sick to hope, too tired to pray.

They give you therapy and pills to ease the pain.
But the gloom and sadness still remains.

Maybe it is written in fate.
Your feelings of sadness, which we both hate.

Maybe it was festering in the womb, before you were born.
This creature called depression, so relentless and strong.

But despite the beast that keeps you in bed.
Crying dry tears feeling half dead.

My love, I just want you to know.
That I too feel powerless and hate it so!

But my love, don't feel that you must smile.
Or I will pick myself up and leave after a while.

Yes it's got to get better, just you wait and see
Yes that's the way, it's got to be

But Heaven forbid, if these feelings never leave?
My love, you must believe

I'll stay with you always, through thick and thin
Regardless of what emotional shape you are in

For our love is beyond space and time
I am forever yours and you are eternally mine

A Death and A Life
By Steve
It is July 4, 2013. I am a consumer on my way this Independence Day to visit my mother in a nursing facility on Long Island. On the train from Brooklyn, an inebriated young man is yelling out the same dulling message: "I can't wait to get those burgers on the grill. I can't wait to taste the chicken. I can almost smell the grill charcoal. Those sausages are about ready to pop." I am not at a barbecue. As with all too many consumers, I stand or sit alone, except for a few acquaintances, who are similarly encumbered with managing their daily existences.
I approach my mother at the nursing home quietly, almost as a burglar, stealthily, but not wanting to rob her—not to disturb her: she is listing to the left side in her steel-bound contrivance of a wheelchair. This lady, who could tell me and my sisters that one day life would be better, has now arrived at a place belying her wishes and predilections.
She has just turned 86, suffering from Alzheimer's disease, at the nursing facility where she has lived since my middle sister and her husband stopped caring for her because it became too hard to move her from bedroom to bathroom to television and back again. My sister had also nursed my father through his Alzheimer's ordeal, until he, like my mother, had to seek hospital attention.
Now my mother calls home this sad repository of lost and wounded souls like herself. As a consumer, I have no substantial income, no home, no security to offer her, haunting and hurting me all the more, as I see her now, defenseless and utterly alone!
The orderly asks me if I want to feed my mother. I measure out spoonfuls and forkfuls of nourishment for her as I'm sure she did for me 60 years ago when I was an infant, but she stops eating. I call a nurse to help me, but my mother, after opening her eyes to respond to "Ethel, are you OK?", the eyes shut once more.
After the nurse withdraws, I grasp the long textured, firm, elongated fingers of my mother's right hand. Then, I massage her shoulder, telling her "It's going to be OK." Unfortunately, I don't really believe this, but continue talking to her, reassuring her I'm working, which she never has believed. As the 1950s to 1970s muzak continues to blare ferociously through the cavernous lunch/meeting room, I stay entwined with my mother for two hours, maybe less, maybe more...for two hours. Eventually, I leave the nursing facility for home as a defeated warrior.
Back with my mother for what might be a final visit, I find myself at Long Island Jewish Hospital on the eastern end of Queens that slips into western Nassau County. I stroke her black/silver-streaked, sweat-soaked hair. A grotesque plastic mask stretches over her face. An insidious blue-ribbed tube futilely feeds my mother's almost lifeless body. God is trying to take her life, to grant her the only peace she has ever known in her time on this planet.
I'm telling her over and over again that I love her. Even though I'm now an adult, I try to erase the terror, the fear of abandonment of the little boy who never heard any of this love from my mother, or not much. I only heard I was unable to cope successfully with the world. Now my mother faces a long repose. She, who as a teenager, lost her mother, is alone with her son, a consumer who can't help her, as she felt defeated to help him when he was growing up. Thus, we are both cast adrift to find our way home.

Madness Network News Revisited
By David Gonzalez, Activist
An Historic and Unprecedented Opportunity
Advocacy is both paramount and essential to human dignity and survival. There are those who advocate for others or believe that they are advocates for others who are unable to advocate for themselves and then there are those who tenaciously and vigorously advocate for themselves. Fortunately, I have almost always been of the latter, although I’m not ashamed to admit that there have also been times when I have desperately needed others to advocate for me.
Then there is activism. Wiki.answers.com defines activism: “Activism is similar to advocacy but where it differs is really the heart of activism. Activism usually involves more action that is direct in addressing issues, in a community for example. Activism is often done by people from within the effected community whereas advocacy is done both by people from within and without the effected communities.”
“Acting on my vision” my first act of activism as a mental health recipient was writing an article for a former NYC Department of Mental Hygiene's Office of Consumer Affair's newsletter in 1999 titled “You Have the Right to Remain Silent.” That was nearly 15 years ago. And while I have also been an unrelenting advocate for others on many occasions, my motivating passion for advocacy was affecting change through activism. But then unexpectedly, without warning, tragedy struck and my health took a devastating turn for the worse. As a result of my deteriorating condition I was physically disabled, unable to sustain full-time employment, and compelled to apply for disability benefits. My driving passion for activism had come to a sudden and screeching halt.
Spending the next couple of years attempting to regain my health and restore my passion to live, I had ample time to read and browse through saved copies of Madness Network News which my close friend and mentor, Ron Schraiber, had stored away in his archives. Ron has always been a major part of my support network and an unending source of information and inspiration for me. I was amazed by the list of authors who had penned articles for Madness Network News. They were highly respected pioneers in the “consumer empowerment” movement such as: Leonard Roy Frank (The History of Shock Treatment), Judi Chamberlin (On Our Own), Howie the Harp and Sally Zinman (Reaching Across: Mental Health Clients Helping Each Other) and a litany of other well-known activists and pioneers too long to list here.
To my dismay I discovered that this publication was no longer available to the general public, and so I sought out Leonard Roy Frank to explore the possibility of making Madness Network News once again available to the public in textbook format. I was elated and overjoyed when Leonard expressed interest and even supplied the missing MNN newspapers that I did not have access to. To my amazement, my passion for activism reignited. I purchased all the necessary hardware and software and I painstakingly began to scan, crop and resize every single page of Madness Network News. And as a direct result of Leonard and Ron’s unwavering support and assistance, the first copy of MNN in textbook format (which consists of the full six issues of Volume #4) was printed in October and is currently available. The remaining seven volumes, which contain all the remaining MNN issues, are ready for printing and publication. MNN truly embodied the essence of “nothing about us without us.” (If you would like to take advantage of this unique opportunity to purchase any of these volumes and to own a piece of our history please contact: MadnessNetworkNews@gmail.com)
The introduction to Madness Network News Volume#4 reads: “Madness Network News (MNN) began as a San Francisco Bay area newsletter in 1972 and then evolved into a quarterly newspaper whose readership extended to a national as well as an international level. MNN became, in essence, the voice and networking center for the “mental patient” liberation movement in the United States, unapologetically advocating for the full human dignity, self-expression and civil rights of people diagnosed and labeled as mentally ill. As a quarterly journal, Madness Network News published personal experiences, creative writing, art, political theory, and factual reporting from the point of view of people who had been on the receiving end of psychiatric treatment and who now found themselves treated as social pariahs, living in oppressive conditions and denied even the most basic aspects of personal choice and self-determination. Known for its use of humor and sense of irony, MNN wrote on its masthead that it covered All the Fits That's News to Print. Ceasing publication in 1986, Madness Network News remains an invaluable historical and primary source material that continues to elucidate the concerns and lives of people diagnosed and labeled as mentally ill both in the past and today.”

NYC Voices Accepts Media Award from the Mental Health Association of New York State

By Sharon Goldberg

NYC Voices has had the great honor of being presented with the 2013 Mental Health Print Media Award by the Mental Health Association of New York State (MHANYS). The award was presented by the nominee, Joseph V. Lemmond, Jr., a mental health consumer, advocate and MHANYS board member to Marvin Spieler, Business Manager and Editor-at-Large of NYC Voices.

Marvin graciously accepted the award with a four minute speech acknowledging our fine publication from its beginnings with founder Ken Steele through today. Marvin stated, “We are a mental health advocacy publication. We fight the good fight with our inspiring articles on mental health issues, both positive and negative. We show that recovery is possible. We offer hope to all consumers.”

We were in good company. In all, seven awards were presented. Among the recipients was Amanda Greenspan, who recently graduated from Fordham University School of Social Work and received the Edna Aims Scholarship Award. Robert Myers, PhD, Senior Deputy Commissioner of New York State's Office of Mental Health received an award for his dedication to mental health. Kimberly Williams of the Mental Health Association of New York City rightly received the Staff Leadership Award for her dedication to helping people with mental illnesses. We congratulate all of the award recipients from the Mental Health Association in NYS.

The event was well received by over one hundred guests at the Marriott Albany Hotel.

The award itself is a replica of the Mental Health Association's bell. The bell was formed from the discarded chains and shackles of ex-patients from asylums across the country when these devices were used to bind the wrists and ankles of persons with mental illnesses. The inscription on the bell reads, “Cast from shackles which bind them, this bell shall ring out hope for the mentally ill and victory over mental illness.”

Marvin Spieler and I attended the conference the next morning. The theme of the conference was “Fitting The Pieces Together.”

Big changes are on the horizon in the delivery of behavioral health services in New York State. In particular, managed care will play a key role. A newly formed New York State Justice Center will be instrumental in seeing that people with special needs (in this case mentally ill) are protected from abuse, neglect and mistreatment. There will be a move away from hospitalizations to community-based services for the mentally ill.

The most significant changes will be for the integration of physical health and mental health services. We will move away from an exclusive medical model known as the qualified plan to a health and recovery plan known as HARP. Health Homes are being established to integrate physical health and mental health. This will change the continuity of care for home and community-based services. We will switch from a care model plan to a self directed patient care plan. There will be New York State care management for high need patients with both physical and mental health concerns.